Monday, 27 June 2016

Kerry says; “I heard Malcolm speak at a Transfusion conference and it
was a story that touched me and my team. I knew immediately that this was
something we needed to bring to Southampton, where there is a large paediatric
population who could benefit from this.

Michael and Malcolm on the launch of Harvey's Gang at UHS

Kerry continues; "I have a daughter with a rare autoimmune condition, which took some time to diagnose and I was immediately reminded of her teary face and endless questions each time she had a blood test or lumbar puncture".

Emily meets Emily!

Fern examines.

It has not been an easy feat to get Harvey’s gang off the
ground at UHS and we are still climbing what sometimes feels like a mountain.
The project is an amazing opportunity to work as a multi-disciplinary
team with child health and the play specialists are fabulous.

I
have also seen a positive change in the pathology staff group, areas have come
together to produce innovative and seamless tours that keep the children
interested. Staff from all levels can’t help but smile when one of these
young people asks them or question or says “wow look at that sample
motorway”. So many people want to be involved – it has been lovely to see
at a time where we are under greater pressures to deliver a service under
constraints than ever before.

Freya, so observant, a true scientist.

Thomas ensuring the track operates correctly; after training!

Finally there is the most important aspect of all. The
children themselves. They are so enthusiastic and soak up everything
around them like a sponge. Their questions and understanding have amazed
the lab staff. The children feel like stars visiting an area that not
many people ever to get to see and of course they truly are little stars.
It’s been a real pleasure to make a difference, to help them understand why
blood tests are required and to help to reduce any fears that they have by giving
them information and positive experiences”.

Wednesday, 22 June 2016

I'm Kayleigh and I'm the other blogger for Harvey's Gang. I feel so privileged to be a part of a fantastic cause. I didn't know Harvey personally but I've heard so much about him and it's an honour to do be a part of this amazing journey that is only just begun.

I too have experienced many trips to Worthing Hospital. Not for myself personally but for one of my siblings and I haven't really shared her story before but I know if Harvey's Gang was around when she was ill, she would have loved it.

My sister Rivkah was born Aniridia which is a very rare illness. For those of you who don't know what this is, it's where there is no iris in the eye/eyes. For Rivkah she has it in both. Not only does she have this but also WAGR which is linked with Aniridia and Wilms Tumour.

Rivkah had just turned three years old when she had to go into Worthing Hospital as she has monthly scans on her kidneys. I was half way through taking my GCSE's and had just finished an exam and wanted to take Rivkah in for her scan. The doctor asked me to fetch my mother and asked me to wait outside. I knew what was coming, I couldn't say it but I knew.

Cancer.

Wilms Tumour.

Wilms Tumour is a childhood cancer on the kidneys and they had found a lump on her kidney. The next day she was rushed to The Royal Marsden Hospital in Sutton where she was scanned to see the the lump and examin it closer. I went with her and she was so good. She was more excited when she saw that they had teletubby toys in the playroom than anything else but that was good because she made me laugh and she had no idea what was going on.

Months passed and every time her temp went up a tad she'd get rushed into Worthing Hospital and kept in until it had gone down. I remember going in to see her and there where so many tubes and she looked so sleepy and pale. But she never moaned once or complained about how much she was in pain or how ill she felt.

Rivkah aged 3 in Worthing Hospital

There was one time she got rushed in and we where given our own room. It was half term by now and I had just begun at college. I said I'd stay in with her for a couple of says so she'd have someone with her at all times. We had a TV and she was awake and talking about wanting to watch something. I walked down to the play room and found a few dvd's. She saw The Wiggles and pointed to that one. We had seen it advertised on another dvd but never really knew who they were. As soon as that dvd went on, she was fixed. And she laughed and laughed and we probably watched that dvd all day everyday for a week. When she was better and out of hospital I went and brought her some dvd's. Her own Wiggles collection. And that too was on everyday all day. Whenever she was rushed into hospital, she always took them with her and watched them on repeat.

Rivakh was given Cemo and Radiotheropy to shrink the tumour and it wasn't really having much effect on it so she had an operation to remove the lump on her kidney. When they came round to scan it days later, they found that it had spread and had begun effecting the rest of that kidney. In the end they had to remove the whole kidney.

I have never met someone so brave and strong. She never complained once and I am so proud of her everyday.

Today Rivkah is 12. She just started High School and has been given the all clear for Wilms. (she could have got Wilms in her remaining kidney) Her eyesight is decreasing and we've been told she'll go blind at some point in her life but she's learning braille and she shows us how you read or feel the words on the page. She wrote her name in braille and was so proud of what she had written. After having cancer for 18 months you wouldn't believe she's lost an organ, she's lively and she's the type of person who doesn't let anything stop her. When she was cleared of Cancer, I took Rivkah to see the Wiggles in the Brighton Center and years later she met her favourite wiggle Murray. (He's the red wiggle) She still watches the wiggles, every time I hear a tune of theirs, it's in my head for days!

I know that if Harvey's Gang was around when Rivkah had Cancer, she would have loved every minute of it. Touring the Labs, having her own lab coat and badge, exploring about blood. She would have got me and my other siblings to recreate her experience in the lab! I'm so proud to be able to be a part of something that will have a positive impact on children and there families and to be able to help keep Harvey's memory alive.

Thursday, 9 June 2016

Harvey's Gang has received a fantastic "Thank you" letter, and Malcolm has a new bear named after him (thanks girls!)

Thank you Debbi, for your very kind letter of thanks.

Dear Malcolm,

Thank you so much to you and all
your team members for facilitating our wonderful tour around your pathology
department. I was blown away by the care, professionalism, warmth and
incredible expertise and specialist knowledge that you all have in bucket
loads. I admit that having been a nurse for over 30 years, I have never really
thought about the skill and fantastic workload that all goes on ' behind the
scenes', and yet without you, all the clinicians would be speculating,
potentially resulting in delays to treatment or worse.

We as a family have had a very
difficult 18 months as we have sought answers and support in caring for Natalya.
It has been very traumatic for her as she has undergone countless blood tests
and procedures, and also it has been stressful for Kashmira, who has also
struggled to understand what is happening.

I cannot praise all the staff at Worthing
hospital enough, especially Dr Rabbs' team, Bluefin, IPU and DU.
Also the lovely Christie and now yourself.

I know that in the NHS it is more
usual to receive criticism and be told that targets need to be reached, but we
work in the context of people's lives, complexities and emotions and praise is
not vocalised enough.

Therefore I would be grateful please if you
could also forward my email to your manager and the chief executive of WSHFT so
they appreciate what wonderful people they have working for them.

Both the girls thoroughly enjoyed
looking around today, were thrilled with their Goodie bag and lab coats and
have named the bear...... well, Malcolm, of course!

With many many thanks to you once
more, and also acknowledging the little lad Harvey who was clearly an
inspirational chap!